Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study

Abstract

PICU hospitalization is particularly stressful for families. When it is prolonged and the prognostic is uncertain, it can significantly and negatively affect the whole family. To date, little is known on how families with a chronic critically ill (CCI) child are affected. This national study explored the specific PICU-related sources of stress, family functioning and needs of families of CCI patients during a PICU hospitalization. This descriptive qualitative study was conducted in the eight pediatric intensive care units in Switzerland. Thirty-one families with a child meeting the CCI criteria participated in semi-structured interviews. Interviews, including mothers only (n = 12), fathers only (n = 8), or mother and father dyads (n = 11), were conducted in German, French, or English by two trained researchers/clinical nurses specialists. Interviews were recorded, transcribed verbatim, and analyzed using deductive and inductive content analyses. Five overarching themes emerged: (1) high emotional intensity, (2) PICU-related sources of stress, (3) evolving family needs, (4) multi-faceted family functioning, and (5) implemented coping strategies. Our study highlighted the importance of caring for families with CCI children. Parents reported high negative emotional responses that affect their family functioning. Families experience was highly dependent on how HCPs were able to meet the parental needs, provide emotional support, reinforce parental empowerment, and allow high quality of care coordination.

Stressful Experiences of Parents in the Paediatric Intensive Care Unit: Searching for the Most Intensive PICU Stressors

“…Changes in the child’s behaviour and appearance can be dramatic and stressful for the parents, especially when they notice that the child is in pain. In such moments they need to be with their child and actively participate in pain relief procedures [ 15 ]. Due to the disease itself and the need for invasive and painful procedures, the experience of pain in the PICU is inevitable and represents an important problem.…”

“…In such circumstances, various emotional, physical, and psychological problems can be identified in parents as early as 24 h after admission and may last for years after the child’s discharge [ 1 ]. They experience a hurricane of emotions [ 6 ]: shock, guilt, loneliness, fear, sadness, and anger [ 15 , 16 ], as well as symptoms of anxiety and depression [ 2 , 16 , 17 ]. In their study, Stremler et al [ 2 ] describe how 24% of parents felt anxiety, about 51% had symptoms of depression, and 26% had significant difficulties in making decisions.…”

“…Very similarly, Hagstrom detects three main causes of parental stress, among which are the child’s illness and the uncertainty of the treatment and recovery process [ 22 ]. At the beginning of the child’s hospitalization in the PICU stress is usually associated with the uncertainty of the child’s condition, treatment, and possible complications, and later it is more significantly associated with concern about the possible transition of the child’s acute illness to chronic one and its long-term outcomes [ 15 ]. Also, additional unnecessary stress for parents in the PICU can be caused by healthcare professionals who diminish the role of parents in providing care for the child [ 15 ].…”

“…At the beginning of the child’s hospitalization in the PICU stress is usually associated with the uncertainty of the child’s condition, treatment, and possible complications, and later it is more significantly associated with concern about the possible transition of the child’s acute illness to chronic one and its long-term outcomes [ 15 ]. Also, additional unnecessary stress for parents in the PICU can be caused by healthcare professionals who diminish the role of parents in providing care for the child [ 15 ]. Psychological outcomes of the parents became worse with the child’s health condition being more difficult [ 2 ].…”

Quality care close to home: Objectives and early outcomes of a second paediatric heart transplant service in Australia

“…Provision of perioperative HT care in NSW has allowed for continuity and consistency of psychological care pre‐ and post‐transplant, without disruption caused by relocation to another transplant centre. Continuity and consistency of care are critical components of trauma‐informed care and can provide psychological security and containment for children and their families in periods of acute medical stress 18 . Access to family and community supports also increases availability of coping strategies for families of chronically and critically unwell children 18 …”